Charities and their good works – continued

Well then – it seems that Bob Fiddaman over at Seroxat Sufferers has been in contact with some of the ‘movers and shakers’ behind the healthcare charities and grassroots patient groups that I find it so difficult to believe in – see my posts here, here, here and here.

There are two posts at Seroxat Sufferers detailing correspondence with Amelia Mustapha (ex Depression Alliance/Centre for Mental Health) and with Dr Chris Manning (Primhe).

I’ll leave you to read the posts and make up your own mind about what’s been said – but what I find strange is that ‘patient advocates’ can be so dismissive of campaigners like Bob Fiddaman and myself, while at the same rubbishing experts such as Professor David Healy, Richard Brook, Charles Medawar, Dr Peter Breggin, Dr Andrew Herxheimer, Paul Flynn MP and organisations such as MIND and Panorama.

Amelia, Jim and Chris seem unconcerned at the way drug companies operate – the way they bury data from clinical trials that are negative and twist words and statistics to wriggle out of any liability. Not one of the three of them seems to be interested in even considering the overall efficacy and safety profile of modern antidepressants.

They are keen however, to question the motives of anyone who takes a view that is not on-message with their own view. On this blog Jim has questioned my motives for writing. Well the answer is – I’ve taken Seroxat and I suffered greatly because of it, as did my family. I’m not going to let the drug companies get away with it if I can help it. Patients must be able to make informed consent about treatment and at the moment the MHRA and drug companies simply do not allow this.

I do not earn any money from this blog – this is not how I make my living. Amelia, Jim and Chris, on the other hand, are ‘professionals’ – who see no possible conflict of interest in taking funding from, and working with, the drug companies.

See this post here and this one here to learn about ‘astroturfing’.

2 Responses to “Charities and their good works – continued”

  1. truthman30 Says:

    Depression Alliance..

    Trojan Horse or misguided advocacy?…

    Why does Depression Alliance discredit those whom speak out about the Seroxat Scandal, David Healy, Panorama , Richard Brook and the mental health charity MIND?

    Amelia Mustapha of Depression Alliance makes the following criticism and insinuations about all of these people and organisations on her myspace blog :

    http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=72661228&blogID=223883074&MyToken=33b0546e-b3e0-4c54-a104-b28221aa468a

    “In no time at all it was back to the UK, just in time for the latest of the Panorama witch-hunt programmes about Seroxat, an antidepressant made by GSK which you will no doubt have heard of mainly due to its bad press. There have been 5 or 6 programmes in all and each has been an exemplar in bad science and shock tactics, using exceptionally emotive language to hide a very shoddy evidence base and relying on the narratives of people who are desperately trying to make sense of a loved one’s death”

    “Reporting like this undermines logic and reason and replaces it with the bogey man and his poor tortured victims. I found it profoundly depressing”

    “The decidedly scary Prozac Survivors Group in the US again are funded by Scientology and the views of Dr Healy – the ‘expert’ regularly trotted out by Panorama – are generally only supported by those pesky Scientologists”

    “Why have Panorama failed to make clear that there is no such thing as a side-effect free medicine and that all patients have to come to an informed decision based on an evaluation of the costs and benefits of taking or not taking a medication”

    Why does Amelia of Depression Alliance discredit the hundreds of thousands of testimonies of people suffering because of this defective med? There were over 64000 calls to the BBC Helpline after the first Seroxat expose in 2002 …

    http://news.bbc.co.uk/1/hi/programmes/panorama/2982797.stm

    There are almost 10000 signatures on the international paxil withdrawal petition …

    http://www.petitiononline.com/mod_perl/signed.cgi?oky71

    Paxil Progress( a US Seroxat Withdrawal support site) has many thousands of members and gets hundreds of thousands of hits a week, its creator, Dacry Baston was interviewed in newsweek in 2005 ..

    http://www.msnbc.msn.com/id/8769536/site/newsweek/

    http://www.paxilprogress.org/forums/index.php?s=c57e6f03ea041a6ad7041ae85e492f1e

    Yet .. Depression Alliance criticises all this evidence as “anecdotal” therefore they dismiss it…

    Why? you may ask…

    Depression Alliance state on their website that they recieve 25% funding from pharmaceutical companies…

    http://www.depressionalliance.org/docs/news/archive2006.html#thetruth

    If you research Depression Alliance you will notice that most of their research has been sponsored or affiliated with the Pharmaceutical industry …

    From the Eli Lilly Corporate Website :

    Lilly in partnership with Boehringer Ingelheim has provided a core grant to Depression Alliance to assist it in the provision and development of support services for people affected by depression. In addition, Lilly and Boehringer Ingelheim have commissioned Depression Alliance to manage the distribution of questionnaires (via its membership database) on a project to understand what services people wish to receive from their GP practice.

    “Lilly and Boehringer Ingelheim funding to Depression Alliance to date in 2006 is £15,000 (£5,000 is a core grant), which represents some 11% of its estimated turnover”

    http://www.lilly.co.uk/Nitro/newTemplates/general/Content_IT_LBCT.jsp?page=1471

    Lundbeck ( distributors of SSRI’s such as Lexapro) are also closely affiliated with Depression Alliance :

    “Depression Alliance and sponsors Lundbeck Limited present awards with the aim of improving the recognition of the signs and symptoms of depression and enabling more effective treatment”

    http://pb.rcpsych.org/cgi/content/full/25/2/79-b

    “Depression Alliance has produced a leaflet, funded by an educational grant from Lundbeck, on how to survive depression over the Christmas period”

    http://www.prnewswire.co.uk/cgi/news/release?id=95769

    Amelia Mustapha also appears on a website owned by Eli Lilly and Boeringer Ingleheim…

    “Amelia Mustapha is Vice President of the European Depression Association and Communications Director of the UK’s Centre for Mental Health. Amelia was previously Fundraising, Marketing and Communications Director of the Depression Alliance, the leading UK Charity for people affected by depression”

    © Copyright 2006 Eli Lilly and Company, Boehringer Ingelheim and the World Federation for Mental Health
    Breaking Through Barriers is co-sponsored by the World Federation for Mental Health, Eli Lilly and Company and Boehringer Ingelheim. All rights reserved.

    http://www.breaking-through-barriers.com/en/2-3-0.htm

    I am not completely against mental health charities and advocacy groups taking a little funding from Pharmaceutical companies , but I think the public is entitled to know about this funding and also is entitled to question the agenda of the pharmaceutical company when it funds research such as this…

    And also, I think Depression Allianace should explain to the hundreds of thousands of Seroxat/Paxil users (and ex users who have suffered ) because of this drug , why do they discredit blogs such as this? Why do they discredit people such as Healy and Brook who for many have been beacons of reason amongst the insanity of the Seroxat experience and subsequent scandal….

    Surely, as a “mental health charity” Depression Alliance should be supporting the very people it represents and not the propaganda of its Pharmaceutical sponsors? …

    Depression Alliance have made accusations of a “profitable seroxat bandwagon” to justify their continual discredit of those whom speak out against this horrible SSRI therefore invalidating there experiences….

    Not only is the “profitable seroxat bandwagon” accusation absurd and deeply offensive…
    It is hypocrisy of the highest order…

    Well, It is certainly obvious here from the information provided, that there are some people and organisations making a profit from their associations with pharmaceutical industries … But it aint the “anti-seroxat bandwagon” that’s for sure…

    For far too long “depression” and “mental heath” has been exploited for the purpose of profiteering and I think the public has a right to know who funds organisations which claim to represent them…

    This kind of pharma influence may not be illegal but it should certainly be ethically questioned and should definitely not be beyond question or reproach (particularly by those whom it claims to represent)

    Also of note from the Depression Alliance website is an endorsement of GENDEP

    GENDEP is a study looking at how genetic information can be used to help doctors choose the right antidepressant for each person.

    We are looking for people with depression, living in London, to take part in this study.

    If you take part, then you will have an initial assessment, and then start taking one of the study’s antidepressant medication.

    You will be closely followed for up to 12 weeks with weekly phone calls. At the end of the three months you will receive a review.

    Do you have depression?

    Do you know someone who needs antidepressant medication?

    Would you be willing to travel to South London for a psychiatric assessment?

    All travel expenses will be reimbursed.

    http://www.depressionalliance.org/docs/help/treatments.html

    GENDEP aims to find a way to use information about patients’ genes to help doctors decide which antidepressant treatment will work best for which patient, with the least side-effects.The European Commission awarded 7.5 M Euros to fund the GENDEP project, led by a team at the Medical Research Council’s Social, Genetic, and Developmental Psychiatry Centre (SGDP)

    GENDEP is also affiliated with the industry :

    From industry there are key contributions from an SME (micro, small and medium-sized enterprise), Proteome Science, one of Europe’s most rapidly expanding SMEs in proteomics as well as from a major pharmaceutical company Glaxo Smith Kline (GSK), which has a successful record of scientific collaborations with several of the GENDEP Centres.

    http://gendep.iop.kcl.ac.uk/collaborators.php

    Personally i think that endorsement of this study is very dangerous for the future of depression treatment with drugs…

    It may seem like researching a genetic marker in order to identify a specific drug for an individuals genetic make up will benefit the patient…

    In theory it possibly would…

    But , what this study will not be assessing is the “emotional/spiritual/mental or physical origins of the “depression” in the individual so any attempt of treatment with medication (genetically specific or otherwise) will lead to the continual chemical treatment of this “disorder” ..

    Surely public money would be better spent on recognising the true causes of depression which are almost always psychological/behavioural and social in origin …

    It is not the depressive that needs to be chemically “normalized” with dangerous and dubious chemicals , it is “society” which needs to change its attitude towards “depression” …

  2. mark shepherd Says:

    I don’t if it is possible to attach, but here is the link to Depression Alliance annula report for 2007.

    http://www.charity-commission.gov.uk/registeredcharities/ScannedAccounts%5CEnds41%5C0001096741_ac_20070331_e_c.pdf

    You will see that total funding from pharmas is £22,000 (£15,000 Ely Lily and £7,000 from Servier Labs), £40,000 is from govt (DoH), £80,125 from other donations and 12,274 from charitable activities, making total income of £154,399. Of the pharma funding £17,000 is restricted, though it does not say to what.


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